Comparing Payments Between Sociobehavioral and Biomedical Studies in a Large Research University in Southern California.

Given the dearth of regulatory guidance and empirical research on practices of providing payments to research participants, our study aimed to examine whether there were significant differences in payment amounts between sociobehavioral and biomedical studies and to examine study factors that may explain payment differences. This study reviewed 100 sociobehavioral and 31 biomedical protocols. Results showed that both biomedical studies and sociobehavioral studies had a wide variation of payments and, on average, the biomedical studies paid significantly more. Additionally, more biomedical studies offered payment than sociobehavioral studies. The primary factors that explained differences in payment amounts between sociobehavioral and biomedical studies were the number of study visits, study time, participation type, risk level, and research method. These findings provide pilot data to help inform future ethical decision-making and guidance regarding payment practices.

Ethical Reflections on the Conduct of HIV Research with Community Members: A Case Study.

Some researchers continue to engage in "helicopter" or "parachute" research and do not ethically engage or collaborate with communities from which data are collected. This paper uses a case study to discuss the ethical issues arising from these research practices and the importance of increasing meaningful community involvement in research. Set in the context of research among older people living with HIV, the case study is followed by the perspectives of four research stakeholders. Through these perspectives, this paper demonstrates the ethical perils and harms that stem from research practices exemplified in the case. We argue instead for researchers to practice participatory research methods in line with community-based participatory research approaches (CBPR), good participatory practices (GPP), the Denver Principles, and CIOMS guidelines. Towards this end, we describe tools developed in collaboration with stakeholders in the research process to help researchers incorporate community participation and reduce unethical research conduct.

"We are becoming older women and then we have two stigmas": voicing women's biopsychosocial health issues as they age with HIV.

In April 2019, nine older women (age 50+) living with HIV in Palm Springs, California, participated in a 90-minute focus group to identify their major health issues, strengths, and HIV and aging-related health priorities. Using the rigorous and accelerated data reduction (RADaR) technique, we identified four major themes: (1) mental health, (2) HIV comorbidities, (3) social determinants of health, and (4) resiliencies. These results reinforce the need to conduct additional research focused on women aging with HIV, an understudied population that requires more effective, tailored interventions to promote better quality of life and healthy aging.

Factors Associated With Payments to Research Participants: A Review of Sociobehavioral Studies at a Large Southern California Research University.

Along with a dearth of regulatory guidance, little empirical research has examined factors related to participant payment in research. We conducted a cross-sectional study of 100 institutional review board (IRB)-approved sociobehavioral human subjects research protocols at a large research university in Southern California. The proportion of studies that paid participants differed significantly by type of research (p < .001) and study population (p = .009). The average payment amount also differed significantly by study population (p < .001) and type of participation (in-person vs. remote; p < .001). In addition, studies that required more visits (p < .001) and more time (p = .011) paid significantly more than studies with fewer and shorter visits, respectively. These findings provide data to help inform future ethical payment practices.

A Multidimensional Assessment of Successful Aging Among Older People Living with HIV in Palm Springs, California.

We assessed successful aging among older people living with HIV (PLWH) compared with older people without HIV. One hundred ten older men and women in Palm Springs, California completed a self-administered 28-question survey, which collected data on physiological and psychosocial factors related to successfully aging with HIV, including demographics, HIV status, sexual activity, health and well-being, experiences of stigma or discrimination, feelings of isolation, receipt of disability benefits, work and volunteer participation, and presence of comorbid infectious diseases, noninfectious diseases, and geriatric syndromes. Most participants were male (96.4%), non-Hispanic white (84.5%), college educated (61.7%), and ranged in age from 55 to 87 years (median = 64 years). Respondents with HIV were significantly older than those without HIV (p = .04). The overall prevalence of two or more comorbid conditions across the sample was 59.1%. PLWH were more likely to report depression (p = .008). PLWH were also significantly more likely to report having a current sex partner living with HIV (p < .001) and receiving disability benefits than people without HIV (41.9% vs. 6.3%). Among PLWH, there was a significant relationship between not working or volunteering and feelings of isolation (p = .005). For people without HIV, we found a significant relationship between feelings of isolation and not living with someone (p < .001), but there was no such relationship among PLWH-possibly reflecting the strength of the support network for PLWH in Palm Springs. Our findings suggest that older PLWH experience successful aging to a similar degree compared with their peers without HIV. However, depression and social isolation remain highly salient issues that threaten successful aging and with which PLWH must contend.

Community-Driven Health Priorities for Healthy Aging With HIV.

Palm Springs, CA, is a retirement community with the highest prevalence of gay men living with HIV older than 50 years in the United States. Through a community-academic partnership, we explored the major health issues, resiliencies, and priority research topics related to HIV and aging. We conducted five community facilitated focus groups with different stakeholders, including two focus groups with older adults living with HIV, one with their caregivers, one with HIV-focused community-based organizations, and a joint focus group with researchers and HIV care providers. Using the rigorous and accelerated data reduction technique, five major themes emerged, which included long-term side effects of medication, social determinants of health, mental health, resiliencies, and involving community in research. These data are important for developing effective interventions, conducting useful and impactful research, and providing health care providers with the tools and knowledge to provide optimal care.

The Need to Track Payment Incentives to Participate in HIV Research.

Providing incentives is an accepted and common practice in human subjects research, including clinical HIV research. While we know that financial incentives among similar studies can greatly vary, surprisingly little research exists on how to determine when such incentives are excessive or constitute an "undue inducement." Multiple factors, such as risks and benefits, study procedures, study budget, historical precedent, recommendations from institutional review boards, advice from other investigators, and local regulations may influence decisions about appropriate incentives, but little empirical data exist about what incentives are offered to potential research participants. Rules for acceptable gifts, services, and compensation should consider study location and population, but without a clearer understanding of currently offered incentives and how these practices match up to ethical beliefs of appropriateness, we continue to follow perceived trends without critical assessment. Here, we present one potential approach to explore the impact of financial incentives on biomedical HIV research and to further clarify undue inducement: the development of a framework to support ethical decision-making about payment to participate. This framework is based on input from people living with HIV, biomedical HIV researchers, ethicists, former study participants, and IRB members and includes a database that allows for tracking payment practices.

The relationship between anogenital HPV types and incident HIV infection among men who have sex with men and transgender women in Lima, Peru: Findings from a prospective cohort study.

Although it is known that individuals living with HIV have a higher HPV prevalence, the impact of individual HPV types on HIV acquisition is less clear. In this prospective cohort study we investigated the relationship between HPV types and incident HIV infection among men who have sex with men (MSM) and transgender women (TW) in Lima, Peru. Six hundred HIV-negative Peruvian MSM and TW participated in a 2-year study with biannual visits. At baseline, participants completed a computerized, self-administered questionnaire on sexual behavior and HPV knowledge and underwent a physical exam including anogenital swabs for HPV DNA (37 genotypes via linear array testing) and HIV testing; follow-up visits included the questionnaire and HIV testing. Participant mean age was 25 years (range = 18-40), with 48.9% self-identifying as gay and 86.5% reporting having sex exclusively with men. At baseline, 530 participants had HPV DNA present (61.1% with high-risk HPV, 84.9% with low-risk HPV). Among 571 participants who returned for any study visit, 73 (12.8%) became infected with HIV during the 2-year follow-up (6% HIV incidence). Compared to those without HIV, more participants with HIV had any HPV type present (97.3% vs. 87.6%, respectively, p = .01), more than one HPV type (79.5% vs. 58.2%, p < .01), or high-risk HPV (72.6% vs. 51.4%, p < .01). Some participants lost to follow-up could have been HIV-positive, which would have affected the relationship of HPV and HIV infection. Our prospective study showed that participants with any HPV type, more than one HPV type, or high-risk HPV were more likely to test positive for HIV. Although most studies have shown HPV-HIV coinfection, our findings illustrate the strong relationship between individual HPV types and HIV infection. This further illustrates the potential utility of HPV vaccine for MSM and TW, not only for HPV prevention but also possibly for HIV prevention.

Indicators of self-reported human immunodeficiency virus risk and differences in willingness to get tested by age and ethnicity: An observational study.

There are many barriers that prevent people from receiving human immunodeficiency virus (HIV) testing; however, little is known about the impact of age and ethnicity on HIV testing. We explored differences in self-reported HIV risk and willingness to be tested in the 2014 Get Tested Coachella Valley Community Survey by age and ethnicity.Data were collected from 995 participants via survey methods (online, hard copy, and in person). Surveys asked about demographics, sexual history, HIV testing history, thoughts on who should get tested, and future preferences for HIV testing.Most participants were women (62.5%), Hispanic (55.8%), and older than 50 years (51%). Participants who did not receive testing said they did not do so because they did not perceive themselves as at risk of contracting HIV (51.8%). Many participants (24.1%) said they did not receive testing because their health care provider never offered them the HIV test. Participants were more likely to have been tested if they were between 25 and 49 years old, compared to participants aged 50 or older (70.2% vs 48.6%, respectively, P < .001). Participants who were not Hispanic or Latino were more likely to have had an HIV test compared to Hispanic or Latino participants (62.5% vs 51.1%, P < .001).Interventions are needed to reach older adults to address HIV testing and beliefs. These interventions must debunk beliefs among physicians that older adults are not sexually active and beliefs among older adults that only certain populations are at risk of HIV.

Human Papillomavirus-Related Cancer Surveillance, Prevention, and Screening Among Transgender Men and Women: Neglected Populations at High Risk.

Researchers and healthcare surveillance systems must clearly disaggregate data for transgender men and women from data for cisgender men and women to identify population-level health disparities and give every person an opportunity for cancer prevention. The limited human papillomavirus (HPV) vaccine recommendations for transgender men and women may be due to the scant literature on cancer prevalence coupled with poor understanding of HPV risks for these populations. Comprehensive cancer screening and prevention initiatives centered on relevant anatomy and sexual risk behaviors that are inclusive of transgender men and women are needed. Moreover, we need specific research to understand the impact of HPV and associated cancers on both transgender men's and women's lives.